A dad left heartbroken by the death of his 12-year-old daughter is preparing to take on his most gruelling challenge yet in her memory.

Neil Cartwright, of Galloway Road, Drakelow, has set himself a series of challenges, which get harder each time, in memory of his daughter Lucy, who died on April 5, 2017, after being born with a rare brain condition.

He is raising money for the Donna Louise Trust, a place that has a special place in his heart after it brought so much joy to Lucy during her short life.

Lucy was born with agenesis of the corpus callosum (ACC), a rare birth defect which sees partial or complete absence (agenesis) of an area of the brain that connects the two cerebral hemispheres, leaving those with the condition physically and mentally impaired.

Neil Cartwright, Emma Stewart with Abi and Amber taking part in the Donna Louise Trust fun run

The youngster also had lots of "mid-line problems" which included poor sight and hearing, a heart defect, dislocated hips and bendy elbows. At the age of 12, Lucy had the development of a four-month-old physically but her mental age was younger than that.

Mr Cartwright said: "If you asked Lucy to do something she couldn't do that but she was responsive if you spoke to her in a certain way. She liked clicking and would always smile when you clicked. If you knew her and how to communicate with her she would respond but you could not talk to her like a normal child.

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"Even a newborn would turn their head if you spoke to them and look at you but Lucy wouldn't do that as she didn't have the muscle strength and the cognitive skills. Any normal noises you would get no reaction but a squeaky door or bagpipes and you would see her smiling away.

"People with hearing difficulties deal constantly with a humdrum of noise. She got used to that constant mummer but when she heard a distinct sound it provoked a reaction."

Lucy was diagnosed with agenesis of the corpus callosum when she was just a week old but it took until she was six to find the underlying defective gene [DNA deletion] which causes it.

Lucy Cartwright had many happy memories at the Donna Louise Trust

The Donna Louise Trust became a happy place for Lucy, a place where she could enjoy a holiday with her family having the peace of mind that she was safe and well looked after while they had a well-earned rest. The family was gradually introduced to the hospice so they could get to know the team and they could get to know her, he said.

It stated with a walk around the building so they could see what it had to offer. They also had an overnight stay with Lucy in a room in a separate part of the building but they could still pop in when they wanted.

When the family was comfortable with that and happy that Lucy was looked after how they expected her to be, the next step was leaving her there and the family going out for the day. she would return home with them at night. When they felt confident to do so, they dropped her off for three or four days at a time.

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Mr Cartwright admits that at first he was not happy about the idea of leaving Lucy as they cared for her at home and the fact she was in a hospice had put him off, but that soon changed when he stepped through the door there.

The 46-year-old said: "For Lucy it was a holiday home really. When we first went, the name hospice made me imagine some kind of dark, hospital like place and we really wouldn't want to leave our child there.

"But we were welcomed and made to feel welcome from the moment we arrived. The idea of leaving Lucy there was hard to do but that does not happen straight away.

"They were offering Lucy 24-hour care, somewhere they could give her experiences that we couldn't give her like with sensory rooms. They get used to the children as they are all different and they took the time to get to know her.

Neil Cartwright and Emma Stewart completing the Great Birmingham Run

"Families are introduced through a gradual programme but it allows parents to have some down time or time with their other children."

As well as caring for Lucy, the Donna Louise Trust offered something for the whole family, with activities for siblings, days out, fun days and therapy for parents who are left thinking about the possibility of their children dying at a young age.

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Feeling charitable

Mr Cartwright said: "When you deal with a diagnosis over a long period of time you just find a way to deal with it. Some parents can't and part of what the Donna Louise does is through counselling parents separately to deal with the issues of a child needing constant care. The word life-limiting was quite difficult to deal with as we did not know what the long-term prognosis was.

"They could not tell us what her life-expectancy was. As human beings we like to understand firm boundaries. We all have to deal with the fact we have got to die one day and we do that by not thinking about it but when you have a child with a life-limiting illness you have to think about it more than you want to.

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"That is where the Donna Louise is good as it helps you through counselling and they have a lot of aftercare services to help you deal with the aftermath of losing a child. It is the unspoken part of it."

Now to keep Lucy's legacy alive, Mr Cartwright has set himself a series of challenges - the first was completing the 5k Donna Louise family run with his partner Emma Stewart, 34, and Lucy's sisters Abi, 11, and Amber, nine, which he did last year.

Neil Cartwright, Emma Stewart with Abi and Amber taking part in the Donna Louise Trust fun run in memory of Lucy

The second saw him and Emma take on the Great Birmingham Run in October and now the couple are preparing themselves for the hardest challenge yet - the Barcelona Marathon.

They will be heading out on Friday, March 9, ready for the marathon on Sunday, March 11, but there will be no rest when they return as Neil is due back at work on Monday morning. he works at Ashby firm SGS, an inspection, verification, testing and certification company in Ashby

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Although the half-marathon did not go as smoothly as they would have hoped as Mr Cartwright says he limped round half of it, he is determined to complete it in Lucy's memory.

He said: "We are in no shape to do a marathon but we are doing it. This is not about us, we are doing this for the Donna Louise and in lasting memory of Lucy's legacy. I am a 46-year-old bloke and I should not be attempting a marathon but I am a bit crazy in that respect.

Neil Cartwright and Emma Stewart completing the Great Birmingham Run

"The best I will manage is a slow plod but I will complete it."

Mr Cartwright is hoping to raise as much as possible for the Donna Louise Trust and they have so far raised £3,300 with their trio of challenges.

The Donna Louise Trust provides care and support for children, young adults and their families, from initial diagnosis until they no longer need the support.

This care is provided in a purpose-built hospice, in the family home - or a combination of both depending on the family's preference.

Currently the hospice cares for more than 240 children and young adults from across Staffordshire and Cheshire. Bosses said they would not be able to do this without loyal supporters who help to raise the £3.5 million needed each year to run the service.

It is set to be a hugely important year for The Donna Louise as bosses strive to raise an additional £1 million to contribute towards the new service they will be offering for young adults, while continuing to offer a wide range of care services for the existing families.

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Agenesis of the corpus callosum (ACC) is a rare disorder and occurs due to the partial or complete absence (agenesis) of an area of the brain that connects the two cerebral hemispheres. This part of the brain is normally composed of transverse fibers.

It can also be caused by an infection or injury during the twelfth to the twenty-second week of pregnancy (intrauterine) leading to developmental disturbance of the fetal brain.

Agenesis of the corpus callosum is frequently diagnosed during the first two years of a young life. An epileptic seizure can be the first symptom indicating that a child should be tested for a brain dysfunction. The disorder can also be without apparent symptoms in the mildest cases for many years.